214 Chapter 8 Of the identified PREMs, 23 were designed to be completed by proxy (59.0%), 10 PREMs (25.6%) could be completed by either or both of the pediatric patient and their caregiver(s), and 6 PREMs (13.4%) had been explicitly developed for completion by the pediatric patients themselves. The PREMs designed for completion by the pediatric patients were Disease-Specific Patient Satisfaction Questionnaire [18], Evaluation of the Quality of Diabetes Care [21], the Give Youth a Voice [25], the Inpatient Survey [26], the Press Ganey Patient Satisfaction Survey [40], and the National Cancer Patient Experience Survey [46]. Among the studies reporting questionnaire characteristics, the number of items ranged from 7 to 89, and the number of domains ranged from 3 to 10. The number of items was not provided for 5 PREMs, and the number of domains was not provided for 12 PREMs. Domains related to communication were most common, such as “communication with parent”, “communication with child”, “communication about care and treatment”, and “provider’s communication skills”. Other examples of reported domains include “information”, “respect”, “coordination of care”, “patient and family engagement”, “respectful and supportive care”, and “overall experiences”. Quality Assessment The quality assessment of the included studies is presented in the Supplement 1. The quality of all studies was rated as either fair (40%) or good (60%). Overall, the risk of bias of the included studies was moderate. Grey literature Ten additional PREMs were identified through the grey literature search (Supplement 2). These PREMs were used to evaluate the experiences of pediatric patients and/or caregivers with daily clinical healthcare in the United States of America, the United Kingdom, the Netherlands, Canada, and Australia. The majority of hospitals in these countries asked patients to share their experiences with the use of PREMs. The gray literature search showed that a variation of PREMs, often self-developed, were used in the hospitals. Some hospitals administered PREMs to all their patients/caregivers, though most hospitals randomly invited recently discharged patients/caregivers to complete PREMs. The modes of administering PREMs identified through gray literature were similar to the ones identified through scientific databases, as listed previously.
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